Montana State University

Twins to discuss cystic fibrosis, lung transplants at March 29 Café Scientifique

February 14, 2012 -- MSU News Service

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BOZEMAN - "From Sickness to Health: A Personal Story of Cystic Fibrosis and Lung Transplantation" is the subject of the next Café Scientifique to be held at 6 p.m. Thursday, March 29, at the Baxter Ballroom in downtown Bozeman.

Isabel and Anabel Stenzel -- twins, authors, patient advocates and healthcare providers -- will provide a personal and professional overview of living with cystic fibrosis, the most common life-threatening genetic disorder in Caucasians. They will discuss clinical aspects of the disease, including the genetics, pathophysiology and current management of the disease, showing how medical advancements have increased life expectancy and quality of life.

The Stenzels will also discuss the psychosocial aspects of living with cystic fibrosis, including coping with chronic illness, the impact of illness on relationships, the gift of a support network, and the wisdom learned from illness. The speakers will address one of the most transformative modern medical miracles -- organ donation and lung transplantation for cystic fibrosis. The twins will share about their global advocacy work to increase awareness about cystic fibrosis and organ donation, inspired by their memoir and documentary film.

Isabel Stenzel Byrnes and Anabel Stenzel, 40, are authors and patient advocates from Redwood City, Calif. Both are Stanford University graduates and have master degrees from the University of California, Berkeley. They have worked with families affected by cystic fibrosis for 20 years. Isabel is a medical social worker at Lucile Packard Children's Hospital. Anabel has been a genetic counselor at Lucile Packard Children's Hospital for over 14 years, helping families impacted by genetic disease. Anabel serves as a board member of Cystic Fibrosis Research, Inc., and Isabel serves on the ethics committee for the United Network of Organ Sharing. Both twins volunteer for numerous cystic fibrosis and organ donation groups.

After a lifetime of challenges from cystic fibrosis, Anabel received two double lung transplants, at the age of 28 and 35; Isabel received a double lung transplant at the age of 34. Their memoir, "The Power of Two: A Twin Triumph over Cystic Fibrosis" was published by the University of Missouri Press in 2007, with a subsequent Japanese edition released in Japan in 2009. The twins' work has inspired a documentary film also called "The Power of Two," which examines the cystic fibrosis and transplant experience in the United States and Japan.

"The Power of Two,"
a documentary featuring Anabel and Isabel Stenzel
will be shown from 7:30 p.m. to 9:30 p.m. Friday, March 30, at the Ellen Theater, 17 West Main, Bozeman. The screening is a benefit for The Cody Dieruf Benefit Foundation. Tickets are $7 and may be purchased at http://www.theellentheatre.com or http://breathinisbelievin.org. Doors open at 6:30 p.m.

Café Scientifique, co-sponsored by Montana's INBRE and COBRE programs, provides a relaxed setting for people to learn about current scientific topics. The concept started in England in 1998 and has spread to a handful of locations in the United States. Following a short presentation by a scientific expert, the majority of time is reserved for questions, answers and lively discussion.

For more information, contact Laurie Howell at (406) 994-7531 or lhowell@montana.edu. For more information about the Café Scientifique concept, check the Web at http://www.inbre.montana.edu/cafe.php

Evelyn Boswell (406) 994-5135 or evelynb@montana.edu